Is an “Alzheimer’s” diagnosis a “nocebo”? Exploring the curious psychology of belief in medicine

A good friend of mine at Oxford (who successfully defended his doctoral thesis in molecular genetics last month — congrats, Si!) recently sent me this fascinating article in the New Scientist that explores the power of the placebo and nocebo effects in human health.

As Peter and I argue in The Myth of Alzheimer’s and in our recent article in The Lancet, there is ample evidence that beliefs and expectations about one’s wellbeing can have profound physiological consequences. This point is underscored in the article by both doctors and social scientists, including the medical anthropologist Robert Hahn of the US Centers for Disease Control and Prevention in Atlanta, Georgia, who has studied the nocebo effect (“nocebo” means “I will harm”).

Hahn points out that “surgeons are often wary of operating on people who think they will die – because such patients often do. And the mere belief that one is susceptible to a heart attack is itself a risk factor. One study found that women who believed they are particularly prone to heart attack are nearly four times as likely to die from coronary conditions than other women with the same risk factors.”

In other words, the power of suggestion (particularly as shaped by the words and symbolic actions of medical practitioners) can have drastic effects on downstream patient outcomes.
This demonstrates just how delicate the clinical encounter is, and bespeaks the importance of doctors having a “narrative competence” — a nuanced understanding of how their words, tone, and general body language can affect the hopes and expectations of their patients. As the article points out, sometimes the mere thought of treatment or the tenor of a doctor’s voice is enough to make patients feel unwell. This means doctors need to choose their words carefully so as to minimize negative expectations, because, invariably, bad words can promote bad physiology.

Of course, all this talk about “negative expectations” and “nocebos” got me thinking about the so-called epidemic of “Alzheimer’s disease”.

Peter and I have expressed both in the book and in the blog our many objections to the social and cultural meanings or “myths” that have sedimented around “Alzheimer’s disease” (ie. that it is seperate from normal brain aging, that it is a “living death”, a “loss of self”, a “never-ending funeral”, etc).

Undoubtedly, individual beliefs about “Alzheimer’s disease” that are freighted with these grim expectations and frame brain aging as nothing more than a “death sentence” can shape the course of clinical outcomes. Not only does an AD diagnosis feed negative ideation for the individual so-labeled, it also affects the way that the rest of us position them in society: as diseased, as other, as half-citizens, etc. As Clifton Meador, a doctor at Vanderbilt School of Medicine says in the article: “If everyone treats you as if you are dying, you buy into it. Everything in your whole being becomes about dying.” Presumably, the same would be true for someone who is given a “death sentence” diagnosis such as AD.

I want to make clear that I don’t think we should entirely remove the AD label from clinical or social parlance; as a medical anthropologist, I am sympathetic to the fact that the disease concept is helpful, explanatory, and even hopeful for some families, and I understand (albeit with some reservations) the need to push the research agenda with a “disease” that is specific and unrelated to aging.

However, this excellent article has made a case for why it is so important that doctors carefully consider the clinical narratives they create with patients and families, particularly those who are facing the challenges of severe brain aging. A more enabling co-created clinical story about brain aging (not to mention a more enabling societal narrative) can help preserve hope for persons and families and can engender beliefs and expectations that will foster social integration, engagement, and a continued sense of purpose that can preserve and even improve quality of life.

Comments

I think this kind of medical physcology is going to be a big growth area in the next few years, both in terms of research and in spending.

It is already known that the human body is very effective at healing itself – medicines tend to aid the healing process by acting through intrinsic mechanisms already exisiting in the body, rather than by introducing some new paradigm into our physiology. In the same way, we can see in many different areas of human experience the power of the mind over the body – in religious experience, the power of positive thinking in the workplace etc, and of course in the placebo effect. When you consider the increasing literature on the links between the nervous system and the immune system, this is hardly surprising; the difference now is that we are starting to understand how the mind is aiding in the healing of the body, taking the lid of this black box which has for so long looked rather mysterious and potentially dubious.

What we also know, as Danny points out, is that this mind/body link cuts both ways. Patients experiencing high levels of stress, releasing stress hormones into their circulation, are more susceptible to disease because of the immune-depleting effect of these hormones. I am sure there will be many more sophisticated pathways elaborated over time; but we should take heed of the emphasis of this piece – doctors and health care professionals need to be aware that their words and behaviour have in impact on their patients, for good or ill.